Tuesday, April 17, 2012

Too Tired To Knit

It's hard, having so many things I want to create and so little energy to create them. In the last year I've managed to knit two hats (one of which was in chunky yarn so really didn't take long), one child's scarf and a pair of fingerless mitts (see pic').

I'm about 3/4 of the way through knitting a strappy top (next pic'), I've about 4" of a stole done and have almost finished a cross-stitch keyring. All in all a feeble creative haul.

The list of planned projects just keeps growing.

So why have I become so slow to create anything when creativity and crafting is what keeps me sane? Energy, or the lack thereof. Caffeine is my friend, caffeine is wonderful; it let's me borrow from the evening enough energy to get through the day at work but that's what it is, a borrowing not a giving. Come the evening it's about all I can do to cook a meal and wash some dishes, in fact our takeaway consumption rather proves that often I can't even manage that. Come my day off the best friend I have is my duvet, if I have a pair of days off the second might see some housework and a little creativity but the first day off is almost entirely lost to exhaustion. I don't want to be like this!

Having to admit to myself that I am never 100% well is hard. It really came home to me a couple of months ago; Mr Goth asked me what was wrong and when I replied that I just didn't feel all that well he snapped at me "You never do!" I burst into tears but it made me think, and he's right, I never do feel well, on a good day I just feel tired and a bit low but a lot of the time I really do feel under the weather. Well, we're beginning to understand why.

I was already aware that I have pernicious anaemia due to an inability to absorb vitamin B12 from food, that's more or less kept under control with B12 jabs every 12 weeks, and that I have chronic depression. I've been resigned since my teens to living with a degree of acne but my self esteem had really taken a nosedive as the amount of facial hair I grow has increased to beardly proportions (and now seems to be being joined by other undesirable bodyhair). I managed to resist plucking for a couple of weeks and asked my GP what she felt the safest method of managing my problem might be; she immediately mentioned the possibility that the cause of my problem might be PCOS (Poly Cystic Ovarian Syndrome), which seemed likely as my sister is already known to have PCOS: but she also requested a load of blood tests to pretty much cover any eventuality. The blood tests came back with a raised Prolactin level so she referred me to the endocrinologist (hormone specialist) and said PCOS probably wasn't the cause after all. Oh I love being complicated! The endocrinologist told me that I probably have two hormone problems going on; the raised prolactin wouldn't cause the facial hair, acne and mood swings so she thinks it likely that I do have PCOS but the raised prolactin is another issue and most commonly caused by an overactive/enlarged pituitary gland. So, more blood tests to check all the other pituitary hormones and I'm waiting for an MRI scan. She said the blood test for PCOS wouldn't work for me as my contraceptive implant would mask the results however the clinical profile seems to fit, a bit of reading though and it seems an ultrasound scan of the ovaries is an alternative diagnostic tool so I will ask about that as it makes sense to get an accurate diagnosis.

Anyway; it's small wonder I'm always tired with conflicting hormonal messages sending me all over the place. It's actually a relief to know there is something wrong! I was feeling so guilty about always feeling tired and rundown, which obviously didn't help with my depression. I still don't like feeling tired all the time but at least I feel able to be kinder to myself about it.

My wonderful sister (The Scientist) has lent me the books she found most helpful in learning to manage her PCOS and I'm trying to take on board the advice they give; I'm particularly finding their food advice useful, perhaps because what I eat is something I do have complete control over.

The possibly overactive or enlarged pituitary gland, well I can't do a lot about that myself but once we've got all the blood test results and had the MRI scan we'll have a clearer idea what's going on and the endocrinologist will be able to advise me on the most appropriate treatment. I have to confess when the GP first told me I might have an enlarged pituitary gland I was scared, especially when a bit of online research suggested surgery is the most common treatment; well, I met a lovely lady 3 days after she had had surgery to remove the enlarged section of her pituitary gland and she was so positive about how much better she was already feeling and how good the surgeon had been that most of the fear evaporated.

I'm not writing this to ask for sympathy but to encourage anyone who happens to be reading this and feels generally rundown but can't put their finger on why to talk to their GP. If I hadn't asked about something that to me seemed unrelated to my health we wouldn't have found out that there is a problem (or two), so don't be afraid to talk to the GP about seemingly vague problems it's got to be better to pick up on things early than to miss a problem because you're not sure whether there's something wrong or not.


  1. I have a Mr Goth, and sometimes I am quiet not wanting to share me not being well etc, and he will ask what is wrong, and I will say unwell, his reply is often 'You are always ill' which is true

    It is normal in chronic illness for folks to be alarmed at first, then relieved you didn't kick the bucket, then used to you being unwell but unable to gauge your level of unwellnessI alwyas think 'why bother telling them?' then I get invited to dinner (like tonight) and have to say I am unwell, and it looks like I am making it up cos I didn't mention it yesterday!

    I am afraid an immune disorder can cause fluctuating body temps, plus if you are always in pain you get 'feverish' which can be vague, and also when you say 'tired' everyone thinks they are tired. Oh no they aren't. We are talking not being able to lift your head above a lying position on a bed or sofa but chronic anaemia can cause all that, especially if you get run down and you are veggie, and too tired to keep up a good diet and cooking, have bowel trouble like Crohns so not able to absorb iron etc.

    I actually have pituitary failure, and had raised prolactin as well as other hormonal stuff in my blood not being normal/good.

    I also started getting dry with dehydration, peeing vast amts all day & night. The pituitary was upset by taking steroids, never went back to normal, and I have Diabetes Insipidus permanently as a result......so just keep an eye on your wee, if there is lots of it, or it is nocturnal and won't switch off, and you noticed it is really really diluted your endocrinologist can test, to see if the pituitary is working.

    When my pituitary failed, I went from 5 stone to 13, felt terribly tired and drained, was often anaemic anyway, but felt like I was on a desert island with constant thirst....still do 8 yrs later. Pituitary dysfucntion, can be due to many reasons. It is rarely anything that can be pinpointed that causes it, mine is possibly due to blocked vessels from my immune syndrome or overuse of steroid treatments. Enlargement is rarely sinister, but upsets the body. They do sometimes operate, but from my time on the endo ward, the majority of patients who came on with pituitary enlargement found the inflammation went down again to normal, with no known cause. It's rare for anybody to have it operated on unless significant. It was an easy op through the nose that all recovered from almost immediately the anasthesia wore off so try not to be too frightened. I used to spend about 20 weeks in a year in hospital, and only a few had that op, stayed in a couple of days mainly to monitor changes in hormones etc, then came back as outpatients and did not seem to cause anybody any pain. However, don't start reading up about what you might have....most tests given by docs are not because they think youhave it, it is because they are routinely trying to rule it out. Often it is only when the most obvious things are ruled out, that they can firmly tell you....well we searched for a reason and got none so your inflammation is ideopathic (meaning no significant underlying cause found) Chin up....and for goodness sakes, going down the route of reading medical books and trying to diagnose yourself, will only scare you.

    Stop the caffeine though. Coffee, tea, and alcohol asand other stuff will affect your pituitary function and put strain on it. You need one half to control your body's water balance, and so drinking caffeine supresses its function then leaves you dehydrated and more tired.

  2. Thank you! It's really helpful reading the voice of experience. I also recognise some really good advice in what you've written, and somehow it's much easier to take notice of someone else's advice than to give myself advice.

    You're right about caffeine, and you know what, you could call it my one real addiction. I had got it under control, no more than 2 caffeine containing drinks a day and next to no chocolate but over the last two months it's gradually been creeping up. I can't realistically see me giving it up completely, I do love good coffee and we all have coffee at 11 o'clock at work, but you've given me the nudge I needed to cut back again (well, I've kept to my limit of 2 coffees today and tomorrow should be easier as it's a day off).